Chemoradiation Alone?

Posted by butterfly58 @butterfly58, Mar 22 5:22am

Hello Everyone,

I just joined the group and been really lucky to have been following the past few months and reading about other survivors experiences or people going through the same. It has given me hope.

My mother 68 was diagnosed with Squamous Cell Carninoma in November, this came as huge shock just like it is with everyone else. She started Chemoradiation in December and finsihed end February, Carboplatin + Paclixatel and 27 rounds of radiotherapy, she managed to finish 3 out of the 5 chemo rounds due to severe low white blood cells counts and platelets.

Its been a very difficult journey and was bedridden since January. she's had difficult swallowing, she's on liquid diet since November, she refused the tube and has been able to swallow with pain but her intake has severely reduced. She is slowly starting to get her head up this week.

My mother is very worrisome of the surgery and I was wondering if there are people who have only been on chemo radiation and cured.

I'm her only caregiver and I want her to make an informed choice. I read somewhere that one shouldn't delay surgery after radiation, as the longer the surgery is delayed the more difficult it becomes due to the tissue damage from radiation, has anyone had any experience with this or how long did you wait after chemo radiation to have surgery? She will have her first scans next week since treatment ended.

Wishing everyone strength, my mum remains positive through it all and it has been calming and inspirational .

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

Profile picture for lionsfan @lionsfan

@butterfly58
I lost about 15 lbs initially post surgery and maintained there for about 4 months. I then got gastroperesis due to the vagus nerve being cut during surgery. This means that my muscles weren't contracting to push food down my new stomach. As a result, I dropped down to 138lbs from 160lbs. I spent 5 days in the hospital and eventually got better. I'm back up to 160lbs. I didn't have lung or heart issues post surgery, but I had issues after six months of post surgical Opdivo immunotherapy. The Opdivo caused hepatitis in my liver, pneumonitis in my lungs and glaucoma in my right eye. All of the side effects are rare however. I'm doing pretty well now. I'm a 68 year old personal trainer and also train myself 2.5 hours per day. I struggle some days with fatigue and an upset stomach, but overall I'm getting better. Again, I'd do it all over again as I'm optimistic going forward. It's definitely as much an emotional journey as physical, but a journey worth taking. I hope this helps and wish you all the best.

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@lionsfan

Did they perform a mckeown surgey or ivor lewis? I'm also wondering considering your chemoradiation worked, why did they still administer immunotherapy?

Thank you for sharing and also your resilience and optimism gives me hope. My mother is not as fit, but I think should she take the journey, she could manage. I'm still trying to share all this information for her to make up her mind. The surgeon has suggested to do an endoscopy first, post her positive first pet scan results.

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Profile picture for butterfly58 @butterfly58

@lionsfan

Did they perform a mckeown surgey or ivor lewis? I'm also wondering considering your chemoradiation worked, why did they still administer immunotherapy?

Thank you for sharing and also your resilience and optimism gives me hope. My mother is not as fit, but I think should she take the journey, she could manage. I'm still trying to share all this information for her to make up her mind. The surgeon has suggested to do an endoscopy first, post her positive first pet scan results.

Jump to this post

@butterfly58
Hi there,

They performed Ivor Lewis surgery. The immunotherapy question is a good one. Although the pathology testing showed no cancer, clear margins, HERS 2 negative and nothing in the lymph nodes, they still had me go through immunotherapy. Initially, I was diagnosed stage 3 locally advanced, but after surgery, a different oncologist said that I was stage 4 because micro cancer cells were on the removed tumor and one lymph node. Since I was on a Folfox clinical trial, I believe they were adamant to follow the pre-determined protocol of chemo radiation, Ivory Lewis esophogectomy and Opdivo. Frankly, Opdivo caused a lot more problems than it solved. Although, I guess I'll never really know? Will the surgeon try to remove the tumor via endoscopy or are they just taking a look? Also, it's helpful, I'm happy to answer any questions via phone too. 262-510-9883. Take care.

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